BBC Radio 5 Live presenter Stephen Nolan discusses adults and children Long Covid with Dr Binita Kane. Dr Kane draws on personal experience as she talks about her own daughter with Long Covid and discusses other post-viral illnesses (PVFS) and ME/CFS.
I think that's the position most children with long COVID are in, and this isn't a new issue, post viral illnesses have existed for a long time, you may have heard of ME/CFS, which is caused by other viruses like Epstein Barr and these poor children have been in this situation for a long time and it's been very under recognised and very under researched so her it's her future is very uncertain.
Dr Binita Kane
And I think the bottom line is that there just hasn't been enough research. I mean there's data from the states to suggest that ME is one of the most under researched of the under researched conditions and is one of the things that causes worse quality of life than a whole plethora of other chronic illnesses, including cancer. And perhaps if we had invested the research in post viral illnesses before now, we wouldn't be in such a pickle with long Covid. But on the other hand, I think long Covid will hopefully drive research and treatments that will help everybody.
Read the full transcript below the video.
Transcript
Presenter Stephen Nolan
Dr Binita Kane is a lung doctor. Hello Binita.
Dr Binita Kane
Hi Steven, good evening.
Presenter Stephen Nolan
Hi, are people still getting very sick from this?
Dr Binita Kane
Oh, that's a big question. I think the number of people getting very sick from this is really very low now because of our vaccination rates.
But one of the things we do worry about is that the Under 75's are not being offered an autumn booster this year. As far as we know, and immunity rates will be waiving from previous vaccinations.
So, it remains to be seen whether the number of sick people will increase due to that reason, but at the moment your chances of getting very sick if you're vaccinated, remain low.
Presenter Stephen Nolan
You know you've hit the nail in the head in terms of something I was talking to my friends about just yesterday, which is where is the booster? Where are they? For those people who are under 75 who want one because Immunity does wane. So, for those people, who listen to the government message about how important the boosters are.
Are they not being offered one at all this winter?
Dr Binita Kane
Not as far as I'm aware, but I'm not an expert on this subject, so I'm not sure of policy and what exactly is going on. But as far as I'm aware, they won't be offered to people under 75.
Presenter Stephen Nolan
OK, that's really understating, isn't it? As a doctor, no doubt you've seen the damage that COVID can do Bonita.
Dr Binita Kane
Yeah, and I think for personal perspective, it doesn’t worry me that I'm going to get really sick from Covid if I contract it now because I've I have actually had four vaccinations now, but what worries me more is the emerging evidence about the longer-term impact of Covid, even in mild disease, and I have certainly seen as a health care professional, colleagues, friends and even my own daughter lives be devastated by long Covid.
Dr Binita Kane
And I think it's a real worry for our population, that we are allowing repeat infections, particularly in the younger generations.
Presenter Stephen Nolan
What happened to your daughter?
Dr Binita Kane
So, my daughter is 11 and her original illness was in January 2021 and she suffered with long Covid since then. So, it's been a really, really difficult 18 months for us and challenging in in all sorts of different ways. I mean, it's been really life changing for our family.
Presenter Stephen Nolan
What have been the symptoms, if you don't mind me asking, that stay with her?
Dr Binita Kane
So, she when she was first ill, she had a mild illness like most children do and she just never really recovered. She was quite fatigued a few weeks after her original illness we had to rush her into hospital. She had this very severe abdominal pain and she had the test. The test came back negative and she came home that grumbled on and then various other things.
Dr Binita Kane
And it wasn't really until they went back to school, 'cause of course, we're in lockdown at that time, in March 2021 that we kind of really realised something was wrong because she just couldn't cope with doing a week in school and that was with adjustments we'd already made 'cause we knew she wasn't right. So she has severe fatigue to the point where she now needs to use a wheelchair for any distance walking her school attendance was until recently, about 20% over the last year and she has a range of symptoms. It's been over 200 symptoms described in children and adults in total.
Presenter Stephen Nolan
Was your daughter a healthy 11-year-old until that?
Dr Binita Kane
She was completely healthy. No underlying conditions, very fit, active loved doing gymnastics, sports, you know, she loved life and was like any other healthy kid.
Presenter Stephen Nolan
That's terrifying and now she is in a wheelchair is just to walk a long distance.
Dr Binita Kane
Yeah, and she's not alone and the latest DNS figures tell us there's something around 120,000 young people in the UK suffering with long COVID 26,000 of those who've had symptoms for over a year, like my daughter. And you know this is an illness that isn't really even recognised at the moment by the government there isn't large amounts of research going into long Covid in children or any at all actually, very little. And there is no support specifically outlined for these children in schools and the long Covid services just can't meet demands because they are under resourced and underfunded. So, it's really difficult.
Presenter Stephen Nolan
Does your daughter face a future, then here in her in her teenage years, she's just waiting to see if this goes away in her body or not? Is that where she's at?
Dr Binita Kane
I think that's the position most children with long COVID are in, and this isn't a new issue, post viral illnesses have existed for a long time, you may have heard of ME/CFS, which is caused by other viruses like Epstein Barr and these poor children have been in this situation for a long time and it's been very under recognised and very under researched so her it's her future is very uncertain.
I think she's lucky in one regard that I I have contacts in the medical world and I'm very interested very interested in long Covid on our campaign for long Covid kids. And I've been able to take her abroad to access research that we don't have in the UK, and she's been started on some medication which has improved her I would say 20 to 30%, which actually when you can't live a life that's been just enough to give her life back.
Presenter Stephen Nolan
And with those other viruses you talk about what does history tell us then, it is over time to most children recover or not when other viruses affect them?
Dr Binita Kane
So, I think the answer to that depends on who you talk to, so I think specialists might say yes, most children recover and they will recover after 12 to 18 months. And when you talk to ME patients and patients and charities they will perhaps have a different view because they've got children who've been ill there for years and years and years. And I think the bottom line is that there just hasn't been enough research. I mean there's data from the states to suggest that ME is one of the most under researched of the under researched conditions and is one of the things that causes worse quality of life than a whole plethora of other chronic illnesses, including cancer.
Dr Binita Kane
And perhaps if we had invested the research in post viral illnesses before now, we wouldn't be in such a pickle with long Covid. But on the other hand, I think long Covid will hopefully drive research and treatments that will help everybody.
Presenter Stephen Nolan
And with all that context, finally, do you still wear a mask? Do you still be careful?
Dr Binita Kane
I'm very cautious. I think I've seen the worst of the worst. I've worked on the frontline of the pandemic for two years I've seen as I said, lives decimated by Long Covid. I'm aware of and follow the research I'm aware of what this virus can do to the body, so I am very cautious I try and avoid crowds and I wear good quality mask as in an SFPT or FFP 3 mask, i I'm out in public indoors.
Dr Binita Kane
And where possible, I try and meet people outdoors and eat outdoors. Or if I have to eat indoors, I'll make sure it's a big airy restaurant, that's got ventilation. Always check out the ventilation though hey.
Presenter Stephen Nolan
How long are you gonna do that for?
Dr Binita Kane
I'm gonna do this until the rates in this country are low enough that that the risk of catching Covid isn't worse than the consequences of catching Covid, but if you know what I mean so even if the risk is low, consequence of that, risk is still too high for me at the moment to stop doing what I'm doing. And I think at a time where the virus has genuinely become mild and we know that it's. Not, it is like the common cold 'cause I don't believe at all at the moment. I'm going to follow the research I'm going to follow the science and make an informed decision.
Presenter Stephen Nolan
Bonita, thank you very much indeed. That is really fascinating. Thank you for talking to us and I hope your daughter gets well soon.